This document summarizes Regina Holliday's experience advocating for patient data access and empowerment through her artwork. It describes how after her husband Fred's misdiagnosis and death from cancer, she began painting murals sharing his medical record and story to raise awareness. This led to meeting other advocates online who provided more support than Fred's local hospital. The document then discusses Holliday's continued advocacy work through paintings, social media campaigns, and her sons' involvement in sharing patient stories and diabetes care through their own artwork.

1. The
Power of Stickers
by
Regina
Holliday

2. What taught you how to be a patient?

3. What taught you how to be an organizedpatient?

4. What taught you about the power of a network?

5. Who taught you to be an educated patient?

6. What taught you to be an empowered Patient?

7. Even a child
can understand
and appreciate
health
Information.

8. When the abuse becomes too bad call this number.

9. I met Fred Holliday in a scenic painting class atOklahoma State University.
We would talk of Stephen King’s Dark Tower.
We would fall in love.

10. You know it is true love when you sell your comic book collection to pay for the wedding.

11. In 1998 Freddie Holliday III was born 4 weeks
early at Lawrence Memorial Hospital in Lawrence, Kansas.
He needed to stay in the NICU.
We we able to stay with him the entire week
in the Segebrecht Room.

12. In Kansas I would paint one painting.
I would paint it for one patient on a hot summer day.

13. When we moved to DC, I would paint
neighborhood murals.
I would also
teach art at a local preschool.
I would work in a toy store.

14. In 2005 Fred would get a PhD in film studies
and would write his dissertation on “Buffy the Vampire Slayer.”
In2006, Isaac Holliday was born.

15. The Holliday Family Christmas 2007

16. Everything we ever wanted…
Resolutions January 2008:
1. Get Medical Insurance for the whole family
2. Get little Freddie into a special needs school
3. Fred gets a job in his field
4. Spend more time together as a family
5. Get a two bedroom apartment
Freddie’s
IEP Binder

17. Fred was happy with his new job.
But he was very tired,
He went to the doctor and was
diagnosed with hypertension.

18. During the months of
January, February and
March of 2009,
Status Lines…

19. We are not in Kansas anymore.

20. On Friday March 13th, We went to the ER because Fred was in so much pain .
We waited three hours before being sent home.

21. Fred was hospitalized on March 25th 2009
for the administration of tests.
On March 27th, he was told while alone that
he had “tumors and growths.”
He was scared and confused and did not understand.
His oncologist left town for the next four days to a medical
conference and was not reachable by phone or email.

22. What was the diagnosis? What were the treatment options? Would he get a pain consult?

23. Systems Error:
More than a bad doctor

24. This is my husband’s
medical record.
I was told it would cost
73 Cents
per page
And we would have to
wait 21 days to get a copy.

25. “She must not have tried very hard to get the record….”
Comparing access to an unpublished book by
Stephen King
to accessing the
Electronic Medical Record.

26. “Go After Them,
Regina.”
April 18, 2009

27. After waiting for
5
days for a transfer
to another hospital for a second opinion,
We were sent with an out of date
and incomplete medical record
and transfer summary.
The new staff spent
6
hours trying to
cobble together a current medical record
Using a telephone and a fax machine.

28. The Power of a Sticker:
This is thevital clinical
information from Fred’s
electronic medical record
presented in the style of the
Nutrition Facts Label.
Then painted on the wall of
Pumpernickel’s Deli in
Washington, DC.

29. “What about the
chemotherapy?”
We were told the order had been placed.
It did not come.

31. I am trying to talk with Christine Kraft and epatient Dave.
Why did we get more help and answers from
Social Media
than from our local hospital ?
Within one day were in email contact
and then spoke on the phone.
By ten o’clock May 4th 2009, I was
talking on the phone with Dave’s
Oncologist about my husband’s cancer.

32. Going to Hospice.

33. We fulfilled our final resolution on June 11th 2009.
We moved into a two bedroom apartment so I could care for Fred in home hospice.
He died six days later on June 17th, 2009

34. Writing
on the
Wall

35. Painting Advocacy meets
Social Media

36. This is the painting 73
cents.
This is the vital patient story, the social history , the sacred heart of Fred’s
ELECTRONIC MEDICAL RECORD.

37. On Tuesday, October 20th 2009 we dedicated the mural,
“Where do we go
from here?”

38. Art and Data as an action: May 17, 2010

39. …in front of a hospital

40. Why not paint about the need
for better hygiene practices and
then enter that painting in an
online vote competition?

41. How would you
define
Meaningful Use?

42. There may be delays on
our way to patient data access.,
but
we
will
prevail.

43. The Patient Portal and Clinical Decision Support for Patients
In orderfor patient input to have equal weight compared to clinical measures,
patients/caregivers must have access to the tools of data creation and capture.
Patients must be part of the active data creation process from system design, triage andthrough
the entire episode of care culminating in a personal discharge summary.

44. Inside of every EMR there is a patient story,
And sometimes it is told by Betty of Bellin Health.

45. 2 year study at Primary care settings of Beth Israel
Deaconess Medical Center, Geisinger and
Harborview
90% patients responded they understood what they
had read & were not bothered by it.
1-2% were concerned/offended by the contents of
the notes
87% of those patients enrolled in this study did
check the notes.
Doctors said the study either only added a modest
increase in work or that it was negligible.
80% Patients claimed greater adherence to
medication protocols due to access to the notes.

46. Telling the story changes things.
How would the child in me change things?
The way patients are treated reminds me child abuse in the 1980’s.
No one talked about it.
Then we heard of Adam Walsh and saw faces on milk cartons.

47. Prototype Consumer Reporting System for Patient Safety,
When the abuse becomes too bad call this number.

48. When everyone
plays,
everyone wins.

49. What happens to user experience when designers like
Michael Graves design wheelchairs?

50. #TweetChat
can change
the conversation.
#EOL
#Tedmed
#DWDchat
#hospice

52. #HospiceCards
Become a reality

53. Data transparency must continue unto the end of a life and beyond.
In order to provide necessary data for evidence based medicine we must reinstate a statistically
significant autopsy rate.
In the United States; hospital autopsy rates of 60% in the 1950s fell to 12% in the early
1990s and less than 5% in nonteaching hospitals.*
Private autopsy services begin at $2,000.00 and are far out of reach of many consumers.
In addition, studies find that there is disagreement between pre and post-mortem diagnoses in almost 30% of cases.

54. Be the change you wish to see.

55. The Power of Stickers
in our daily life.

57. The more stickers that are out there the more important it seems.
The more important it seems, the more people want to know what it is.
The more they ask they ask each other.
It gains
real power from perceived power.-Shepard Fairey

58. Freddie grows beyond peering through
a door crack to walking in a Gallery.

59. David Lee Scher, MD
All over the world, patients
Are demanding their data.
They are demanding access
to the data from their doctors,
from their hospitals,
and from the devices
inside of their bodies.

60. Blue Button: More than app for veterans
and the story of Peter L. Levin

61. Jerry Matczak
Shares the story
of his brother’s
life and death
upon his back.

62. Isaac grows up.
He joins the gallery as an artist.
His jacket is named “Feelings.”
In this year’s jacket he focused
on diabetes care.

63. Standing out and looking different,
Can be uncomfortable or frightening.
But is often needed for advocacy.
You can take a negative and turn
it into a
POSITVE.
~ @ReginaHolliday